Has anyone used immunosuppresive drugs?

[1tiredmama]

This may be a dumb question, but remember I'm new here. I'm reading about kids who get better after abx and IgIV treatments, only to backslide after their immune system kicks into gear due to re-exposure to offending agents.

 

As someone who has a form of Lupus causing attacks to my nervous system, I can't help but wonder why there is no mention of immunosupressant meds. The right one gave me my life back. I was barely functioning a few years ago, and now, I'm healthier than ever.

 

So, as I read about regressions after a treatment that Dh and I may only be able to afford one time, I feel compelled to ask what might be a stupid question. Yes, I know that it lowers immunity to everything, and I would hesitate to use them on a young child, but a teen can be taught how to lower their risk of catching things from others. I'd rather deal with more infections, so long as the immune system stays in check.

 

Your thoughts, please.

[PowPow]

This is something that some of us have talked about before. I think that down the road, maybe. It has been mentioned to me by several docs as a possibility, but no one is really "ready" to do it. Cellcept and rituxan are the ones mostly discussed, however we did at one point have a rheumatologist who was planning to start my daughter on enbrel, right before she took a huge turn for the worse. I rreally hope this does become an avenue for us at sometime in the near future.

[LaurenK]

This may be a dumb question, but remember I'm new here. I'm reading about kids who get better after abx and IgIV treatments, only to backslide after their immune system kicks into gear due to re-exposure to offending agents.

 

As someone who has a form of Lupus causing attacks to my nervous system, I can't help but wonder why there is no mention of immunosupressant meds. The right one gave me my life back. I was barely functioning a few years ago, and now, I'm healthier than ever.

 

So, as I read about regressions after a treatment that Dh and I may only be able to afford one time, I feel compelled to ask what might be a stupid question. Yes, I know that it lowers immunity to everything, and I would hesitate to use them on a young child, but a teen can be taught how to lower their risk of catching things from others. I'd rather deal with more infections, so long as the immune system stays in check.

 

Your thoughts, please.

 

 

Humira is approved for severe treatment resistant depression in adults. Maybe that could work. We use steroids with success despite Lyme.

[tpotter]

This may be a dumb question, but remember I'm new here. I'm reading about kids who get better after abx and IgIV treatments, only to backslide after their immune system kicks into gear due to re-exposure to offending agents.

 

As someone who has a form of Lupus causing attacks to my nervous system, I can't help but wonder why there is no mention of immunosupressant meds. The right one gave me my life back. I was barely functioning a few years ago, and now, I'm healthier than ever.

 

So, as I read about regressions after a treatment that Dh and I may only be able to afford one time, I feel compelled to ask what might be a stupid question. Yes, I know that it lowers immunity to everything, and I would hesitate to use them on a young child, but a teen can be taught how to lower their risk of catching things from others. I'd rather deal with more infections, so long as the immune system stays in check.

 

Your thoughts, please.

 

 

Interesting that you have Lupus. This gives even more possibility to the fact that your DS is suffering from an autoimmune disorder like PANS. Which immunosupressant medication did you take? Basically, steroids are an immunosuppressant. I don't know about the others, though, I'd be interested to know.

[PowPow]

Laurenk, do you have any info about humira and TRD? I did a quick search and could not really find much. Thanks!

[1tiredmama]

Thank you all for your input! Yes, tpotter, given the fact that I have an autoimmune disorder and the fact that my cousin had juvenile RA, I felt certain even before I knew about PANS that my son has an AI disorder that is attacking some part of his nervous system. I just couldn't find any data to prove it.

 

He has been in treatment with a trial of Plaquenil, which is actually an antimalarial, for about a year. I also tried it for nearly a year. It only helped a little for me, and I don't think it is doing anything for ds. I am now on Imuran, an immunosuppressant, and I love it. It keeps the severe fatigue, joint pain, and nervous system symptoms in check." I'd like to try it for ds.

 

Prednisone can be very, very helpful alongside of one of these types of meds, but the weight gain is awful, and getting off of it takes forever. My son already struggles with self control when it comes to all the wrong foods, and we argue everyday about what he can and cannot eat/drink--he'd like McDonald's chicken nuggets everyday! He is a bit overweight, so Prednisone (beyond a burst) is not an option.

 

He sees my rhematologist--and she's great--but I should probably add a peds rheumy to the list of professionals we need to consult.